My daughter is home and we went on a beach walk yesterday! The stupid oxygen keeps me from going fast. She went for a bike ride afterwards. Hooray!
Yesterday evening she brought up social distancing and how careful she should be. She has about 5 friends who are home that she is going to walk with. I am still wearing a mask over my oxygen tubing most places. She will unmask if they are vaccinated and they don’t have a cold or anything else. Even a cold would make me worse at this point. It makes me grumpy to be vulnerable, but I appreciate the discussion.
Ok, maybe it is not inappropriate for work. But it would be a little weird for work… I was going in the woods with my oxygen tank. “Local doctor of 21 years found eaten by cougar, which then died because it couldn’t digest the oxygen tank.” Heh.
Listening to this, fabulous!!!
When pneumonia nearly takes me out, I want COLOR. I think I managed it with this. The skirt is not only silly, but a little short for me to wear to work….
… your oxygen tank doesn’t QUITE match the turquoise of your outfit. Dang. And it’s not a great photograph. And the mirror has water spots. And your hair needs combing. And you aren’t wearing “yipstick”. And you don’t care….
Warning: this post contains some time out words.
How do I process the game you played?
I am the subject of the game.
Or the victim.
Or no, I refuse. It is your game. I was not playing. I am the honey badger, metabolism so fast that I have to run from one meal to the next or else I will starve. I eat whatever I can find: cobras, bees, anything. I eat or I die.
You have tethered a honey badger to oxygen by playing a game.
I am the football and you have been kicking me, throwing me, catching me, slamming me to the ground as hard as you can in the end zone.
And now that I am worn and damaged and torn, you’ll toss me away, not even notice me, and find a new ball.
You will need a new football. To play with.
I don’t envy that person.
The truth is, it will be one of you. The group will rest on their laurels, oh, we nearly killed her, wasn’t it great? We showed her. She is so stupid, took her what, 21 years to fucking figure it out? And she thinks she’s so smart.
I was looking for food because I am always hungry. The food insecurity goes back to infancy. Maybe to the womb: my mother says she was not to gain weight and spent the entire pregnancy longing for a gigantic ice cream Sunday. Think of being in a womb, attacked by antibodies to tuberculosis, and starving all the time. Might be a little bit worried when birth happens. Fuck, I am going through a tunnel, what horrors await me here? But maybe there will be more food.
Maybe someone will love me. Maybe there will be someone for me to love. And feed. We can give each other food.
My advice to you is don’t be the ball. I was the ball for 21 years. I was so hungry the whole time, for food and for love, that I kind of noticed but dismissed it as unimportant. Food and love were more important. Work and my patients were more important. You don’t matter and your games are trivial.
It will be the weakest one who will be the ball. You worry that you are the one. You should worry. You had better look strong right away. Post some horror. Write something really tough. Don’t show anyone any niggling doubts. Um, the ball is wearing oxygen. I am feeling a little bad about this. Are you feeling bad about this? The ball isn’t just crazy, it’s hurt. Actually crazy is an illness too: I know that you discriminate and think that cancer is a legitimate illness and that mania isn’t, but you are assholes. No, you’re too small and pathetic to be an asshole. You are a one celled animal that is clinging to a hair on an asshole and you get shat on daily. And you know, deep deep in your tiny shrunken heart, that you deserve it.
I am so glad I am not you.
I am tethered to oxygen. But I am healing. I don’t think you can. You are locked in your small sick pathetic triangulation competition and pretending that it’s a game that it’s ok that you are just playing.
Meanwhile, the oxygen is portable.
I have food and I have love and I have work to do that lifts me on wings. I will go too near the sun and light on fire and fall burning, but that’s ok. I’ve done it before. The ocean heals me, always. It is so much fun to fly!
This is in memory of my mother, my father and my sister. I miss all three and I love them and they love me. Today is the day my mother died. The longer we live, the more days are days when someone that we love died. But they are still here. They are in the rocks and the sky and the trees and the coffee cup. They are not in sugary donuts or foods that cause heart attacks. But they are all around us, cradle us, still love us. Joy to you and the memories of your loved ones who have gone on. Blessings.
Qia is in her first year of college, 1200 miles from home. She joins the ski team, hoping to ski. There really aren’t mountains in Wisconsin. They are hills. She doesn’t have a car so she has to get rides to the ski hill. She does get demo skis, because she is on the team. It’s mostly guys, a few women. The guys chug a beer at the top of each run. The runs are ice after the first time down. It is very poorly lit and very cold. Qia is afraid of the ice and the guys and the drinking.
At Christmas she goes home, to Virginia. She really wants ski pants, she tells her mother. She is cold. She is still skiing in spite of the drinking and the scary guys and the ice. They yell at her to go faster but she goes the speed where she will not die. It doesn’t matter anyhow. She goes to a formal race and they have three foot tall trophies for the boys and nothing, not even a ribbon, for the women.
At home, her father is laughing. He is giggling, silly. He doesn’t make any sense. He gives Qia the creeps. Her mother sails along like nothing is wrong. Qia’s little sister has gone from the extroverted life of the party to locked down so hard that her eyes are stones. Fungk, thinks Qia.
Her father loses his down jacket, leaving it somewhere. Then he borrows her mothers and loses it too. Qia’s sister has out grown hers. On Christmas morning there are two down jackets and a pair of ski pants.
The ski pants are two sizes too small. Her father laughs. The down jackets are the ugliest colors, cheaply made, junk. Qia watches her mother and sister try to smile.
Qia leaves the ski pants and returns to Wisconsin. She gets a spider bite. It spreads. She goes to the doctor. He gives a laugh of relief and says it is shingles. He has to explain what shingles is. “It either means you are very run down or have severe stress.” Qia laughs. Worst Christmas of her life so far.
She realizes the problem. Her father has been abducted by fairies and a changeling put in his place. She reads everything she can find about changelings. Adult changelings are rare but not unknown. She pulls out every stop on top of her heavy schedule to learn about how to fight fairies. She can’t afford to hire a fighter. She finds an iron sword at a second hand shop. She hangs around the gyms and watches the fairy fighters fight. She goes home and practices every move. She collects herbs.
She sets things up before spring break. She arrives home and asks her mother and sister to go with her to a specialist in changelings and fighting fairies. Qia is sad but confident. Her mother and sister both cry after watching the movie about the behavior of changelings. Qia asks her mother and sister to help her.
They both refuse.
Qia can’t understand it. But she has studied and read the books. She will do it alone.
She meets with her father. She tells him how awful and frightening Christmas was. She tells him how ashamed and scared she was. She reads him a letter that her sister wrote to her, emotionless, about having to watch him when he is curled in a fetal ball at the top of the stairs. Her mother asked her sister to watch him, so he wouldn’t hurt himself. Her sister says that she wanted to go out with her friends. Her sister is in tenth grade.
Her father doesn’t say a word.
Qia begs him to tell her the key. The word that will open the portal. She shows him the sword and lists all of her herbs and describes her training. She tells him that after she defeats the fairies he will go home and her real father will be returned. She says that she knows he isn’t happy here, with mortals.
He doesn’t say a word to her for the rest of spring break. Her mother and sister do not say a word about it either. Her father drinks more heavily. Qia returns to college.
Qia refuses to come home for the summer. She stays in Wisconsin. She does not want to be around any of them.
Her sister is three years younger. Qia wishes that she could scoop her up and take her to Wisconsin. Qia frets and is in pain. Qia’s second year starts and her sister is in eleventh grade.
Qia’s mother calls. Qia’s sister is on her way. 3000 miles away. “At the last minute, C invited her to live with them in Seattle.” says Qia’s mother. “C was leaving the next day. Your sister decided and went with her. It’s a relief because your sister was getting A’s on tests but refusing to turn in homework, so overall she was getting D’s. ” Qia is relieved. C and S have a son named after her father. He is younger than her sister. Qia also has a cousin 6 years older who lived with C and S and still lives in Seattle. Qia wishes her little sister the best.
Years later, after her mother has died, Qia asks her father about it. By now her father is back and the changeling is gone. I was angry, says her father. But your sister was getting into lots of trouble. Really bad trouble. What could I do, locked in fairyland. He does not go into what Qia’s sister was doing.
And after her father dies, Qia finds a letter. The letter is from C to her mother. It is talking about her sister going to live with C and S. My mother lied to me, thinks Qia. I am not surprised. I wonder why she lied to me. Qia thinks it is probably because her mother set it up with C and did not tell her sister. Qia thinks that her mother lied to her sister. Qia thinks how much that would have hurt her sister: that her mother chose the changeling over her. Her sister would have been terribly hurt and angry.
But so many are dead, what does it matter? Qia’s mother is dead. Her father is dead. Her sister is dead. C’s son is longest dead. S is dead. Even the changeling is dead. Friends in fairyland let Qia know. Actually, Qia and C are the only ones left living.
C did not lie to Qia or her sister directly. She let Qia’s mother do the lying.
Qia does not talk to C again.
Qia is tired of liars.
This is not a story about fairies. It is about alcohol or any addiction. We must support families, because the whole family becomes ill. Triangulation, lies, competition, enabling. In my maternal family, the enablers die before the enablees. I have chosen to leave the system and I refuse to be either an enabler or enablee. If you are in that sort of system, you may find that the family resists you leaving and tries to draw you back in to it. When you do finally succeed in leaving, there will be a strong reaction. When the pirahnas run out of food, they eat each other. Stand back and don’t get drawn back in. The newest victim will need to make their own decision to stay or leave.
…singing. Singing on oxygen is a challenge. Why? Well, because I am TRAINED. I am trained to breathe through my mouth, slowly filling my lungs, for the next phrase. I don’t breathe through my nose because that is noisier, might make a sound during a rest.
No, really. Singers and conductors think that way. PERFECTION is not achieved but we sure have fun trying.
So if I breathe through my mouth as trained and ingrained, and the oxygen is coming by nasal cannula….
….I am goofy and hypoxic by the end of the song. WHY do I feel like I might fall over, I think? WHAT the hell is the matter with me? OH. I HAS NOT BIN BREATHING THE GOOD OXYGEN STUFF. Facepalm. Nosebreathe.
But it’s pretty ingrained. I keep forgetting.
The good news is I feel WAAAAY better. My lungs don’t feel like someone stuck a burning torch in them any more. It hurt for six weeks, every time I sat up or stood up, the muscles of heart and lung HURT. I knew it was my heart but I also was pretty damn sure it was not coronary artery disease and it wasn’t congestive heart failure. That day I went to the ER, normal labs and echocardiogram even though it hurt like shit. I do wish the ER doctor had thought to walk me. He would have put me on oxygen then and I would have gotten better faster. And then I think of 2014 and 2012 and 2005. I didn’t think of it and neither did ANY of my doctors. I did USE oxygen in 2014. I had my father’s tanks because Evil Lincare had kept delivering them even when my father had a concentrator and so there were 16 or 18 full size oxygen tanks in his small house which is a huge fungking fire hazard, those asshats.
Now Lincare is delivering to me and under much improved management. I think the man who delivered it WAS management. He said yes, they had some shady and inappropriate behaviors in the past but he has been KICKING BUTT AND TAKING NAMES and they aren’t going to do that shit any more, not with him in charge. I liked him. Thank goodness Lincare is being run ethically.
I have pulmonary function testing today. I think that will be abnormal. However, I am enough better that I may no longer qualify for oxygen. In which case my insurance may try to refuse to pay for it. Oh, goody, a totally legitimate fight and they will be darn sorry if they try to refuse the oxygen. Mr. or Ms. State Insurance Comissioner! CEO of Insurance! Board of the Insurance Company! Poor sorry little rural family practice doctor, now disabled from her clinic for her fourth pneumonia and ya’ll refusing her oxygen when she has no income because her disability doesn’t kick in until she’s been sick for three months.
Heh. Bring it on. Got my tai kwan do, kinda rusty, my katana, a yard long rusty pipe wrench… bet I get coverage for the oxygen.
Meanwhile I either gotta stick the nasal cannula in my mouth when I am singing or bloody well breathe through my nose…..
A friend and I are talking about Mother’s Day yesterday.
Somehow having a song about Mother’s Day came up. “Bet I can think of one.” I say.
“Humph.” says the friend. Or some skeptical comment.
I start singing.
“That’s NOT a mother’s day song.” says my friend.
“Well, it is if your mother is dead.”
“It’s not cheerful.”
“Yes, that’s true.”
So here is a recording. I haven’t learned the guitar part yet so I thought… well heck, why not sing along with Dave Van Ronk?* This is the third take. Might replace it with a later take later today.
Trigger warning: I miss my mom. This is about missing our moms. Hugs, all.
Happy Mother’s Day and hugs if you miss your mother.
*Is this a copyright violation? It probably is. Someone yell at me if it is. My brain is muttering something about sampling. Let’s see, from circa 1959 to 1961… does that make a difference?
I am realizing that I have had chronic fatigue since 2014. Or possibly 2012.
We know that chronic fatigue can be kicked off by infection. One in ten people with a severe infection is diagnosed with chronic fatigue. Severe stress can also kick it into gear or a combination of stress or grief or attack or assault and infection can kick it in to gear.
We don’t really understand it, though I am finding experience to be a very great teacher.
As far back as medical school and residency, I was curious about it. I love the edges of things: it is the things that we don’t understand that I study. I pick up bits of information like a crow or magpie. I add it to the pile of things related to it in my brain. Sometimes I will add just one more small piece and the entire pile of puzzle pieces with suddenly, in just a blink, rearrange itself into a picture.
The pieces won’t arrange themselves until I have a complete picture. Or, well, until something in my brain is satisfied that it is complete enough. Since nothing is every complete or completely understood, is it? Nothing fixed and we make up all the words.
Anyhow, chronic fatigue would explain why running my own clinic, I did not see more than ten patients a day. Also I do have some OCD, hidden under a messy packrat gene. You would NOT look at my house two months ago and think that I have some OCD. Messy and chaotic. But I am a precision demon about patient charts and I am always thorough. In 2009 our local hospital let me know that my reputation was of a brilliant diagnostician. Ironically, this was right before they fired me for arguing about the patient quota of 18 per day. I ran late because I could not stop being thorough. I cut my work from 4 days a week to 3.5 but that was still two hours of dictating and paperwork for every day of clinic. So clinic was 28 hours plus the dictating and paperwork and calling specialists and calling insurance and a one hour meeting at lunch with the administration EVERY DAY FOR MONTHS, so really clinic was 8 hours of patient contact plus the one hour lunch meeting. Redo the math: 28 hours plus 4 one hour lunch meetings plus 7 hours of the generated deal with stuff AND do not forget about call nights. 39 hours plus call. At least one call night a week, 6 pm to 8 am, so that is 51 hours or more. I felt that I was working flat out as fast as I could every single day in clinic and I still was not keeping up.
I also really really resented the one hour lunch meetings because I was only allowed 20 minutes for a patient and was to see them “for one thing”. Seeing people “for one thing” is unethical and dangerous because for example: a diabetic with a toe infection. That is already two things. But you’d better calculate the third: kidney function, because you have to dose the antibiotic for the toe based on the kidney function, and diabetes is the number one cause of adult kidney failure in the US. Oh, and you’d better check on the diabetes too, because if their blood sugar is whomping out of control, the toe won’t heal and that’s how they got infected in the first place. So I might have ranted a bit about seeing people “for one thing” because I think it is an UNETHICAL DANGEROUS LOAD OF CRAP. DO NOT PUT UP WITH IT, DOCTORS AND PATIENTS OF THE UNITED STATES. It is corporate trying to maximize profit and they can frankly go to hell and stay there. Single payer. ‘Nuf said.
Even more ironically is that two years after they fired me for vocally disagreeing with the quota (I would add that I was not diplomatic and I was vociferous), the hospital dropped the quota down. To what I had asked for, 16 patients a day. I actually had kept track through my career and knew that I averaged 16 patients a day. One partner usually saw 20 or 21, but the problem was that he kept the chart in his head. When I would get one of his patients, I’d have to say, “Um, you have some heart disease, right? You’ve had a heart attack or a bypass? What year was the bypass? How many vessels?” I’d be guessing from the medicines and clues… but the past history was not entered into the chart. So, yeah, I only saw 16 patients a day but my charts were solid and thorough and the charts on his patients were a lot more comprehensible every time I saw one of his patients and did the chart for him. He owes me. Pay up.
Anyhow, I have worked really hard for the last seven years, in spite of some chronic fatigue and fibromyalgia. Which I rather refused to admit to myself. I thought I was “well”. I felt bad that I didn’t clean up my chaotic house.
Now I forgive myself for the house. Because the truth is I couldn’t clean up the house. Not after 7-10 patients and running my own clinic, CEO, chief cook and bottle washer, dealing with the covid changes, trying to figure out medicare’s arcane language, fielding malpractice insurance, business insurance, insurance insurance and phone company scam calls.
I have been sick at home for 6 weeks. I have been on oxygen for 4 days? 5 days? I would have felt a lot better and been able to think better if I had been on oxygen the whole time. Meanwhile, turns out I CAN clean up and organize in spite of being hypoxic. My house is now a very different place and the garden has changed enormously very quickly.
I am sending more money to India, via https://www.pratham.org/ . I can hardly bear to think about the people who cannot get oxygen. It feels terrible and terrifying to not be able to breathe. My chest hurt and lungs and heart when I even sat up, much less walked. If I walked slowly enough, it was bearable, just barely. I walked anyhow. Those edges, I am always there.
It is very weird being on oxygen. I have told people in the past when I had pneumonia. I’ve almost died from it four times. Heart rate of 135 holding oxygen level, but it doesn’t feel good. I am confident that I do not have coronary artery disease, because if I did, I would have had a heart attack the first week. A heart rate of 135 is running a marathon. It is exhausting. Right now on oxygen, my heart rate is 86 and oxygen at 98%. My normal heart rate is more like low 70s. Normal is 60-100, you knew that, right?
It is very weird being on oxygen. Because now I have a visible signal that I have been/am sick. Somehow this is making people more kind, more concerned. I keep thinking, but I told you I was ill before. Why does being on oxygen make people kinder?
I think that is the difference between having an illness where there is not much comprehension and one that we think we understand. So chronic fatigue and fibromyalgia are dismissed, disrespected and discriminated against, while cancer and sepsis and covid-19 and massive trauma in the military are supported. People send gifts.
In the past, tuberculosis was thought to be an illness of sensitive poets. Then the tuberculosis bacillius was discovered and it morphed into a disease of the poor dirty overcrowded low scum of humanity. My mother had tuberculosis, but luckily it was when we’d moved on to sanitoriums, because it is airborne, so stop the spread and take care of people. There was also medicine. My mother had to take 36 pills a day. At one point in the hospital, someone brought her a medicine.
“What is it?” asked my mother.
“Don’t worry about it.” said the nurse.
“No,” said my mother. “I want to know what it is.”
The nurse got the doctor. He came in and said, “Take the pill.”
“What is it?” said my mother. She was 22, 8 months pregnant, very poor, and a student at the University of Tennessee.
“Don’t worry about it.” said the doctor.
My mother threw it at his head. Because not only was she 22, 8 months pregnant, very poor and a student at the University of Tennessee, but she was also the daughter of F. Temple Burling MD, a psychiatrist, physician and professor at Cornell University.
And he had told her, don’t take anything unless you know what it is…..
The picture is of my mother, Helen Burling Ottaway, in 1945. Helen Temple Burling II at the time of the picture.
I think the final straw that made the hospital fire me was me singing “The 18 Patient Blues” which I’d made up, to the tune of 16 Tons, into the Chief Financial Officer’s voicemail and at the open mike at the Upstage, here in town. I admit, it was not diplomatic.